Go to page

Member

Hi,
8 months ago we was on holiday, she run, rode a bike, walking 10km. In August she has started to have fasciculations in the thighs and with the index finger. In October she got damage to peripheral nerves diagnose without any motor neurons damages. In February this year we had new tests and she has all motor neurons damages, bulbar and piramidal syndrome. Now she can't move her legs or arms.

But in December the muscle between the 4th and 5th finger was rebuilt and she could move thumb of the hand. 3 days ago she told me that she can a little move fingers in hand.

Moderator

First of all, I’m sorry you find yourself here. Your wife certainly has had some worrisome symptoms.

The history is not typical for ALS, however. To go from healthy to being unable to move arms and legs and also with bulbar symptoms in 8 months is extremely fast progression. Also the things you mention about peripheral nerves, pyramidal system involvement, and some improvement in the thumb from rebuilding a muscle — none of those are things we see in ALS. I realize English is probably not your native language and that there is likely more to the history.

Did you see a neuromuscular specialist? If not, I definitely recommend it.

If they did confirm ALS/ MND, then this is extremely rapid progression, and we’ll do our best to support you. Let us know how we can help.

Moderator

I would agree that she should have a second opinion on the diagnosis, especially, as Karen points out, we don't usually see "rebuilt muscle" in ALS. This is said to be the best center in Poland, if you have not been there as yet:

Member

Yes my english is not fluently, sorry. In October last year we made test EMG and ENG in 2 diffrence laboratory, they coinfirmed that noone motor neuron is damaged, just peripheral neuropathy. In the end of December her muscule rebuiled, the doctor and physical teraphy confirmed. In the start of begining all symptoms we have had neurolog doctor with als specialist(Iwo Sugocki). Before he told us that als is immosible, he is a polish national consultant ALS. Also he show my wife's tests to one of doctors in Warsow Hospital Banacha. They confirmed his diagnose. After new tests in February from hospital they told that it looks like als diagnose but it's so strange. The doctor from hospital which put this horrible diagnose after 3 weeks got new tests - positive igm GM1 and GQ1b, positive dsDNA, normal reference creatine phosphokinase. And after they don't know what my wife has. We going to another hospital but 12th of May. In Banacha Hospital we should wait about 5 months, it's to long.

Moderator

The GM1 antibodies can be seen in motor neuron neuropathy. The anti-double stranded DNA antibodies can be seen in systemic lupus. Both those conditions are autoimmune (unlike ALS) and have treatments, so it would be helpful to get that additional opinion.

Member

The doctor from the hospital where we'll go on May 12,who saw the results, stated that the case is strange and getting to know the wife's history from years ago and now can expect MMN, lupus disease, psychiatric disorders.

We have respiratory examination test and it's 100% ok and there is no problem with swallowing and drinking.

Moderator

I don’t completely understand your question, but it looks like you might be asking about the blood brain barrier. The blood brain barrier separates the circulation of the brain from the fluid around the brain. This barrier is selective about which substances get to come into the brain from the blood stream. This is important because a lot of medications don’t make it into the brain.

Moderator

The blood - cerebrospinal fluid barrier is similar to the blood brain barrier, but the blood-csf barrier is localized at the choroid plexus epithelium. Diseases involving this mainly are in the form of cysts that mostly affect babies. So I’m guessing this is not what you’re referring to.

Attachments

Moderator

Oh thanks for the clarification. Hard for me to see the numbers but I think they compared serum and csf albumen levels and found them abnormal. What did the doctor say? I think this can be abnormal in several neuro diseases- MS, AD and HD among them. Some mouse studies of ALS too I think. This isn’t a test result I have ever got in spite of a number of spinal taps for some of which they gave results